I asked Daniel to take a photo of my staples the day after surgery as I wanted a record of the healing. Each day, I had a bit more energy and felt encouraged with the recovery. I knew I was to watch for signs of infection or discharge from the wound. No issue there. And it was nice to know that once I washed my hair, my scar wasn’t visible.

And after a week, it seemed that most of the things I most feared were not happening — headache, return of pain etc. At about day 10, Thursday, December 10, I thought I was coming down with a cold as my nose started to run. After a couple of days I started to wonder why the cold didn’t evolve like a normal cold with increased congestion or a sore throat. Then I started to wonder if this was a dreaded cerebrospinal fluid leak. So, on Sunday, I wrote to Olive in Winnipeg and asked if I should be alarmed.

I received a response the next day and was advised to keep my head elevated 24 hours a day to see if the dripping would resolve on its own. In my discharge notes they had recommended I see my doctor as well. I saw him on Tuesday afternoon. He thought it was serious enough to send me to Emergency. So, I went and they admitted me for observation that resulted in an unsatisfactory experience for all involved.

It was somewhat frustrating at the hospital because I saw different people every day and each had a different opinion. I had provided them with Dr. Kaufmann’s cell phone number and email address but they did not contact him. However, on Thursday morning when they started wanting to escalate the intervention, I called Dr. Kaufmann myself to discuss. He had a different choice of management. I wanted to discuss it further with the resident who had been assigned to me that day but he was too busy to come and talk with me. The neurosurgeon whose official care I was under only saw me once during the whole hospitalization early my first morning and never came back. All communication with him took place between the residents and the nurses. Somehow, my neurosurgeon in Winnipeg and I were not part of the decision-making team.

It is very difficult to build trust when communication is poor. And I spent two full days in the hospital confused, receiving mixed messages, in less than ideal conditions.

I waited for several hours for Thursday’s resident to return to discuss and formulate a plan. He was paged and said he would be by in 30 minutes and I waited an additional two hours after that. It was approaching dinner time. I was on a ward with sick people . . . my husband had come by to pick me up, so I discharged myself “against medical advice” as the nurses had no discharge instructions from a doctor.

Upon my arrival home, I wrote to my neurologist and to Dr. Kaufmann explaining the situation to them. I am capable of doing everything that the nursing staff was doing for me at the hospital, in a much cleaner and quieter environment — monitoring my temperature, asking myself if I have any pain or headache, giving myself medications, etc. The only thing I can’t check at home is my blood pressure but it’s always 95-100/65 so it’s not really an issue as far as I can see. And we live 5 minutes away from the hospital by car or ambulance.

The irony is that last night I came down with a real cold, so that has made things a bit tricky for me. I have to stifle coughs and sneezes and make sure that I do not blow my nose. I am sitting a lot, sleeping with my head up at least 30 degrees and doing my best to eat well to maintain healing nutritional status.

My right ear is somewhat plugged so I’m taking that as a good sign, indicating that there is fluid building up there and perhaps suggesting that a leak into my ear from my skull is slowing and possibly healing.

Dr. Kaufmann has asked me to keep him informed of my status. The nasal drip has been present for 10 days and is much less than it was a week ago. If it doesn’t resolve, I may need another surgery to repair it. But we still don’t know if it’s a leak or not.

On Monday, we met with Dr. Kaufmann for a pre-surgical consult. He offered us a couple of choices, including another rhizotomy. He wanted to make sure that we considered all the risks and the understanding that the nerve cutting procedure is irreversible. If he cuts too much, I could be left with some significant deficits. He also said it would be possible to repeat the balloon compression rhizotomy and that gave the possibility of some very good long-term relief. After some tears and re-thinking about the risk to my good eye — my right eye — we opted for the rhizotomy.

At Tuesday’s surgery, all went well. Dr. Kaufmann reported to Daniel that he was able to inflate the balloon to the maximum and keep it inflated 3 minutes each at .6 .7 and .8 mL. I came out of the general anesthetic early and was up and about in a few short hours. I was out of pain. I was not as numb as I expected to be and the lack of increased numbness worried me a bit. But there was no pain, so I was encouraged. As I was doing so well and not in pain, I was able to leave the hospital the same day.

Daniel and I had just finished dinner in our hotel room. I leaned over to reach for the newspaper and had an electric shock up my forehead. Uh-oh . . . I knew from that moment that this did not bode well. I emailed Dr. Kaufmann and the nurse, Olive. We got a quick response and were encouraged to go in for another appointment the next day.

In the morning, I had another big shock as I washed my face, all around my eye and up my forehead. Ouch. We met with Dr. Kaufmann and talked about options again. He was concerned about the fact we had travel considerations and lived in Vancouver. But we asked him to think of us as living in Winnipeg and to make a plan from there. Fortunately, the whole team stepped up and reorganized surgical schedules and appointments to give me an appointment on Monday morning.

We’ll be doing the Dandy procedure. Others call it a total sensory rhizotomy . It will involve cutting into my skull behind the ear and severing two-thirds of the nerve. It will lead to total numbness, have possible complications with my eye, as well as reduced jaw opening. So, if I have to puree food, c’est la vie.

Tuesday, Wednesday and Thursday were very tough days. Lots of pain breakthroughs as bad as pre-surgery. It felt like my face was lighting up like a neon sign with the electric pain shooting through! Since yesterday morning, I’ve been doing well as the drugs seem to be holding the pain back.

In the meantime . . . it’s been an active week here in Winnipeg with the Grey Cup in town.

I was invited to speak in Portland at OHSU on August 3, 2015 about my experience in the health care system and the difficulties I encountered along the way. This was an enrichment week for 2nd year medical students at OHSU and attendance was voluntary.

The tech people at OHSU provided me with a link to my talk — it’s about an hour. Perhaps there will be an opportunity for me to do this in Vancouver. I’m not sure how long it will be available online. I hope there is a way to get a digital copy of the talk.

At the very end I talk about the lack of a swallowing assessment by swallowing experts in Vancouver but I do not name the hospital. I also go into a fair bit of detail about the errors that Dr. E. made in the initial consult report that coloured my whole stay in that hospital, although a senior internal medicine doctor had the opportunity to be a bit more inquisitive and wasn’t. I think Dr. E. demonstrated “anchoring bias”, “premature closure” and “confirmation bias”. In other words, he didn’t think when he evaluated me. (For more discussion on diagnostic errors, there is a great post here .) And it was likely compounded by the the neglect of the neurologist who failed to take my complaints seriously in the fall of 2011.

Marc Gosselin (radiologist) introduces me at about 3:00. I start at about 5:00 and go to 1:07:00.

The link below takes you to where you can see two screens — one of my powerpoint slides and the other of me in the classroom while I speak.

https://echo360ess.ohsu.edu:8443/ess/echo/presentation/accc0447-e32f-473c-bd66-d9149ac4f027?ec=true

This next link just shows you the powerpoint slides and you hear my voice only.

One of the concepts Dr. Gosselin wanted them to really understand was “diagnosis momentum” in my long journey to diagnosis. And he could not believe that we have a practising neurologist in Vancouver at VGH who cannot diagnose MS with an MRI!

I received great feedback from the students. One came up afterwards and told her own story of not being listened to before being diagnosed with a serious medical condition. And another female student wrote to me:

I am one of the second year medical students that came to your lecture today at OHSU. I just wanted to say thank you for coming to speak with us. I was so moved by your story–it is one that I will carry with me throughout my career.

We had a bit of fun while in Portland . . . for a future post!

I had been fasting since dinner the night before. As we got ready to leave, I had more pain that felt like a knife in my face. I took my medications with small sips of water. I was relieved we were so close to the surgery time. We arrived early at the hospital and went to the Admitting department and they escorted us to the outpatient surgery ward where I got changed.

The nurse put on a pair of support hose on my legs and then proceeded to insert the IV.

After administering antibiotics and steroids by IV, I waited until they came for me to take me to the pre-op area. This time Daniel wasn’t allowed to come to the pre-op area with me as it was much busier. So, we said good-bye and he snapped a photo.

I spent a fair bit of time in the pre-op area as Dr. Kaufmann’s previous surgery must have been longer than anticipated. My surgery had been scheduled for 11:00 am and they came to get me just after noon. I asked the nurse in the OR if she could thank Dr. Kaufmann for me as I was so pleased to be helped as quickly as I had been. She assured me that she would and put the mask over my face and told me to take a deep breath, then took it off. She told me Dr. Kaufmann had just walked into the room so I could tell him myself. He came over and smiled at me, took my hand and listened to me as I expressed my gratitude. I wanted to thank him ahead of time, just so he knew that I was grateful, even if the surgery didn’t go as well as we all hoped, as there are no guarantees and some degree of risk with each procedure.

It’s funny that I don’t remember regaining consciousness in the recovery room this time although I do remember being there the previous time. But I do remember arriving at the outpatient surgery area where Daniel was waiting for me. He told me that Dr. Kaufmann talked to him right after the surgery and explained that he got good inflation of the balloon indicating there was no significant scarring of the nerve from the last procedure.

I spent the night alone on the ward. Daniel arrived at 5:00 am to take me back to our hotel as they needed all the beds for day surgeries. They removed my IV needle and discharged us. We had a follow-up appointment booked for the next day with Dr. Kaufmann and a prescription for Valacyclovir to help manage an expected herpes outbreak.

We got back home yesterday afternoon from Winnipeg. I’m feeling relieved but exhausted. I made a short video in the hospital a few hours after the surgery. I’ll just post it for now. This was on the evening of Tuesday, September 16, 2014.

Yesterday, after my appointment with Dr. Dvorak, I walked through VGH as I wanted to visit somebody I know who works there. As I walked down one hallway, I recognized a face. It was Resident N, the one who was involved in my care in a different hospital in December 201l.  I stopped her as I wanted her to see me. I told her that my symptoms were real and I was diagnosed with multiple sclerosis. I wish I had had enough presence of mind to remind her that she was the one who almost pulled out my feeding tube when her supervising doctor decided to do a ‘tough love’ approach with me to force me to comply with their plan or they would send me home.

She said she vaguely remembered me but I look a lot different now. I wish I had given her one of my business cards with the URL on it. But if she’s doing a placement at VGH right now, I could write her a letter. Maybe I will.

I wrote about it here if you want the whole sordid story.

One year ago today, Daniel and I walked upstairs from my hospital bed to the MS Clinic for my 1:30 appointment with neurologist #5. During the interview I had many bouts of pain in my face up through my head and each time one hit me, I stomped my foot and flailed my arm. But I was eager to answer all his questions and get the official diagnosis. He did a full head-to-toe neuro exam but I don’t recall anything being observed and his report states that there was nothing remarkable other than the facial pain.

He told me he hadn’t been able to view my MRIs as they had been archived. (This is what happens when the ordering neurologist doesn’t look at the images.) He had put in a request to get them but he wouldn’t be able to see them until the next day. I had my CD copy of the MRIs with me and we loaded them onto a computer. He was able to identify old lesions that indicated I have had MS for some time. With relief, I said, “So, the diagnosis is official?” and he said yes.

It took over a year from when I told every doctor I saw that there was something wrong with my body to get an official diagnosis.

One year ago today, I was cancelling an appointment with Myrna, my psychologist. I had managed to move my December appointment at the MS Clinic to a day that week. I left her a message and she called me back because she could hear I was in a lot of pain. She told me it was inhumane to leave me at home alone in pain. She suggested I get some help but I had no idea about where I could get help because I had been so unsuccessful with neurologist #3 and I had been into ER on the weekend and they just gave me drugs. I told her that it would be just better to put me down because we put animals down when they’re in that much pain. She asked me for my GP’s number and called her. Then she called me back and told me to get into a cab and go to my GP’s office because they were going to admit me because of a risk of suicide. To be honest, I wasn’t quite suicidal yet but I couldn’t see how I could get out of pain. I was trapped in my body and had nowhere to go.

At my GP’s office, I had several bouts of electric shock pains up to the top of my head. I fell to my knees sobbing and screaming. My GP asked me which hospital I wanted to go to. I thought about VGH first but then realized I had an appointment at the MS Clinic at UBC the next day and it would be easier to just go to UBCH. That’s what I did. I got in a cab and went all the way out to UBCH and hoped that somebody there would be able to help me.

I was afraid that nobody would believe me but I couldn’t function and I was in so much pain. At this point I was not too keen on hospitals or doctors considering I had been laughed at, dismissed as a psychiatric case, treated as though I had an eating disorder, and even told by neurologist #3 five weeks beforehand that I did not have MS.

It was at UBCH that things finally turned around for me. I had the great fortune of meeting Dr. Perry who was interested in pain. And he had the good sense to call a neurologist to assess me, instead of a psychiatrist. Dr. Silke Cresswell made a persuasive case to admit me there at UBCH and fortunately, Dr. Perry had a bed available on his ward. He graciously gives Dr. Cresswell all the credit as my ‘ray of hope’ for her thorough and professional assessment.

Their support made a huge difference and they were our first rays of hope in our traumatic struggle to get answers. Not all neurologists are created equal.

Thank you Dr. Cresswell. And thank you for calling me a “pleasant patient” in your report.

On January 6, we planned a discharge meeting for 10:00 with the attending physician, Dr. M, and Resident K. My husband had a tough time parking, so he was a bit late — a bit distressing for both of us because he is NEVER late. The attending physician didn’t seem to understand why it was important to me for him to be there. I was surprised that there would be any question and I assumed they would think it was important too. So, when he arrived, the meeting commenced.

I took notes as I always do. They assured me that there was no ‘pathology’ — at least no ‘life-threatening’ pathology. We discussed a plan for me to increase my oral caloric intake to 2000 calories/day and to gain weight at about 1 lb/week. That alone was surprising to me as there was no discussion about ‘nutrition’ with a self-professed nutrition expert. It was all about calories.

I was to follow up with the out patient dietitian. I was to follow up with my family physician within the week and to see him for weekly ‘weigh-ins’. I was to continue with drugs, including pantoprazole, mirtazapine and gabapentin. Dr. M gave me a prescription for a ton of gabapentin as it is tolerable in high doses for most people. And I was to follow-up with Dr. M at her clinic within the next two weeks. Yes, that’s right — her eating disorders clinic, despite the psychiatric assessments that did not indicate an eating disorder. If your only tool is a hammer . . . I guess they couldn’t really think of another reason that I wasn’t eating and they wanted to prevent another hospital admission. I was more than happy to do that. I had tried my best to prevent this one and I NEVER wanted to go through that hell again.

The other main focus of this meeting was to tell me to stop being ‘disease focused’ as I needed to work on ‘life balance’ and get back to doing things that I liked to do. They recommended that I engage in cognitive behavioral therapy. There were no suggestions on how to do that or where to go for that. Fortunately, I had been seeing my psychologist and I would be back to see her after returning home.

Resident K wrote the discharge summary. She did a pretty good job, summarizing the information in the chart and fortunately, did not repeat the many errors in the initial GI consult report. But that didn’t mean that the GI consult was out of circulation. And at that time, I didn’t know exactly what it said but I knew the hospital admission had saved my life but left me on my own again with no real answers.

And she called me Mrs. Sweeney — I HATE that!!!! — almost as much as I hate being called a ‘lady’ in medical reports. Fortunately, in this report, she called me a 51-year-old female. My husband and I have different last names. It surprised me that a young woman would call me Mrs.

I’m not a lady and I’m not a Mrs.

On the morning of January 3, I was woken up by a familiar face. The new resident on my case, Dr. K, was the same resident I had seen about three months earlier on October 14 at VGH. I went into emergency there seeking help as I was losing weight (about 124 lbs) and I wanted to prevent a hospital admission. I went in calmly and coolly, knowing that I was on the verge of some possible serious consequences. At that time, she encouraged me to pursue any options I had. I knew there was something wrong with my body but everything was ‘normal’, so I was sent home as I wasn’t dying on the spot and wasn’t in need of emergency treatment.

So, it was a surprise to see her and perhaps it was a surprise for her to see me. The tone of my interactions with physicians and other staff improved over those last few days and she was responsive to me. I was concerned about the lack of tone in my anal sphincter. They were sending me home before I regained control of my bowels. She told me it would improve. I told her about my numb feet but that never got into the chart notes or her discharge summary.

I had some hope that she might do some additional thinking and perhaps consider what might really be happening to me. But she was under orders from the attending physician and all I was at this time was a case for residents to practice on and to discharge me as soon as possible.

My husband had organized meals and food contributions from friends, and that was really nice to have visitors with real food. I spent the last few days walking as much as I could around the ward to try to regain strength. On January 5, the feeding tube got blocked again, so they pulled it out for good.

I forgot to mention any follow-ups with the psychiatry resident. He was a nice man who came in for chats once in a while. I had one last meeting with the female psychiatry resident who first saw me with the official psychiatrist, and I was cleared to go home. Nice to know that none of the psychiatrists thought I was seriously mentally ill. The admitting gastroenterologist had told my husband that I would be in the hospital for a long time, probably because he thought I would be admitted to the psych ward.